Natural History Study of Children and Adults With Adrenocortical Cancer (ACC)

Study Summary

Background: Adrenocortical cancer (ACC) is a rare tumor. The prognosis is very poor for people with advanced stages of ACC. Some people may live with ACC for years; others live for just months. Treatment options for ACC often do not work well. Researchers want to study the clinical course of the disease. They want to understand how adrenocortical cancer appear on imaging scans, how they respond to therapies, and the best treatment for them. Objective: To gain a better understanding of adrenal cancer. Eligibility: People ages 2 and older with ACC who are enrolled in NCI protocol 19-C-0016 Design: Participants will be screened with a review of their medical records, tumor scans, and cancer test results and reports. Participants may have CT and other scans. For the scans, they will lie in a machine that takes pictures of the body. They may have blood tests. They may have a 24-hour urine collection. They may be asked to sign a new consent form for some of these tests. Participants will complete paper or electronic surveys. The surveys will ask about the effects of cancer on their emotional, physical, and behavioral well-being. Participants will receive recommendations about how to manage their issues and potential treatment options for their cancer. Participants home physician will be contacted every 6 to 12 months to collect medical information such as test results and scans. Participants may be asked to return to the NIH every 6 to 12 months for follow-up tests. Participants will contact study staff if there are any changes in their tumor. Participants will be followed on this study for life.